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So, talk to me about thyroid removal?


Jenny in Florida
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Background:

 

As  I've shared here on and off, I landed in the hospital (for the first time) almost four years ago. I had a nasty, persistent, hacking cough coupled with irregular/racing heartbeat (which turned out to be atrial fibrillation). After several false starts, we determined that my throid was overactive. The minute we got that under control, the other symptoms disappeared. The problem turned out to be, though, that I seem to have both Graves' and Hashimoto's, a situation my endocrinologist has described as "a war in [my] throat."

 

After two and a half years on medication, things had not resolved. Both my GP and my endocrinologist wanted me off the methimazole I was taking, because apparently there are issues with long-term use. Also, in my low-thyroid function phases, I was exhausted and felt like I had been run over by a truck. Every time we tried to lower the dosage of the methimazole and/or propranolol, though, my symptoms recurred. I ended up back in the hospital with a-fib for another couple of days a year or so after the first stay, after which my dosages were increased again.

 

At that point, I agreed to go ahead and try the radioactive iodine ablation. I took the pill, went home to wait out my three days of isolation, and waited to feel better. It was supposed to be three months . . . then we decided to wait and see what happened in six months . . . Long story not-too-short: I'm now 18 months post RIA, I'm back on the meds I was supposed to be able to discontinue, and my levels of both types of antibodies are actually going up. I'm still alternating between stress/depression/anxiety/exhaustion/insomnia, plus I've gained 50 pounds. We've now pretty much had to admit that the RIA just plain didn't work.

 

So, with that said, I'm going in on Thursday to consult with a surgeon to discuss removing my thyroid so we can be done with this. 

 

I'm normally a pretty sturdy, no-nonsense person, but I will admit to being just a little bit terrified of surgery. So, it's a measure of exactly how tired I am of feeling so crappy that I'm willing to consider this option.

 

I've spent a few hours with my friend Google looking up information about the procedure and typical recovery. However, every site I found had extremely similar wording, even, and I would love to hear from anyone who is willing to share more personal, specific experiences?

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I'm sorry. I do hope the surgeon is encouraging. Is this laser surgery? 

 

I don't know yet. I went to my regular appointment with my endocrinologist last week. He asked how I was feeling (lousy), and we went over the most recent lab results. He asked if I wanted to consider going ahead with surgery -- something he has been reluctant to suggest previously. When I said yes, he gave me a referral to the surgeon. I stopped by on my way out of the building and made an appointment for a consultation. I'll know more after Thursday.

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Hi Jenny,

 

I had a partial thyroidectomy in April and it was not a huge deal.  It's the biggest medical procedure I've had; it was the only time I've ever had general anesthesia.  But I felt pretty back to normal within a week, and mostly functional in a couple of days.  Not awful pain.  No stitches or staples.  Just glue!  You will have to deal with adjusting the medications after it's over, and I was fortunate not to have to.  But the surgery itself was not bad.  So ask away or PM me if you have other questions.

 

 

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I had a thyroidectomy about 18 years ago.  I was in the hospital for 3 days I think.  I had the surgery in the spring, and I was self-conscious about wearing a swimsuit that summer.  For a couple years in fact, I wore one that had a higher neckline, that just came up enough to cover the scar.  I also wore shirts with higher necklines for a couple years.  (Even sleeveless shirts in the summer.)  After that, I found a little chain necklace that pretty much completely covered the scar, and I wore it all the time.

 

The more acute healing took a couple weeks probably.  It also took about that long for my body to adjust to producing no synthroid and then figuring out which strength I needed.

 

After I got that figured out, I have experienced no problems whatsoever in the 18 years since.  I feel great.  I don't notice any difference at all between having a healthy thyroid and having no thyroid with synthroid medication.  I do have a blood test yearly to see if I need to change the strength of my synthroid, and have had to tweak it now and then.

 

I still often wear a little chain necklace to cover my scar, but it's not too bad and barely noticeable unless you are looking hard at it.

 

Edited by J-rap
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I had only half my thyroid taken out, but for that I did not have to stay in the hospital, though they offered it as an option if I had a lot of pain or any complication.  Fortunately, neither was true. If I had elected to have a total thyroidectomy, I would have spent a night in the hospital.  

 

And a different view about covering the scar-I planned to do this, until after the surgery.  It felt awful to me for anything to touch that area!  So I showed off my scar LOL.  I couldn't stand to cover it.

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Background:

 

As  I've shared here on and off, I landed in the hospital (for the first time) almost four years ago. I had a nasty, persistent, hacking cough coupled with irregular/racing heartbeat (which turned out to be atrial fibrillation). After several false starts, we determined that my throid was overactive. The minute we got that under control, the other symptoms disappeared. The problem turned out to be, though, that I seem to have both Graves' and Hashimoto's, a situation my endocrinologist has described as "a war in [my] throat."

 

After two and a half years on medication, things had not resolved. Both my GP and my endocrinologist wanted me off the methimazole I was taking, because apparently there are issues with long-term use. Also, in my low-thyroid function phases, I was exhausted and felt like I had been run over by a truck. Every time we tried to lower the dosage of the methimazole and/or propranolol, though, my symptoms recurred. I ended up back in the hospital with a-fib for another couple of days a year or so after the first stay, after which my dosages were increased again.

 

At that point, I agreed to go ahead and try the radioactive iodine ablation. I took the pill, went home to wait out my three days of isolation, and waited to feel better. It was supposed to be three months . . . then we decided to wait and see what happened in six months . . . Long story not-too-short: I'm now 18 months post RIA, I'm back on the meds I was supposed to be able to discontinue, and my levels of both types of antibodies are actually going up. I'm still alternating between stress/depression/anxiety/exhaustion/insomnia, plus I've gained 50 pounds. We've now pretty much had to admit that the RIA just plain didn't work.

 

So, with that said, I'm going in on Thursday to consult with a surgeon to discuss removing my thyroid so we can be done with this. 

 

I'm normally a pretty sturdy, no-nonsense person, but I will admit to being just a little bit terrified of surgery. So, it's a measure of exactly how tired I am of feeling so crappy that I'm willing to consider this option.

 

I've spent a few hours with my friend Google looking up information about the procedure and typical recovery. However, every site I found had extremely similar wording, even, and I would love to hear from anyone who is willing to share more personal, specific experiences?

 

If you have your thyroid removed, won't hypo symptoms kick in? Have you done the Autoimmune Protocol? It usually helps people with autoimmune diseases (both Graves and Hash's are autoimmune).

 

Have you heard of Low Dose Naltrexone?

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A friend of mine had to have her parathyroid removed.  Her sister is a Physical Therapist and recommended KinesioTape for preventing scarring.  It really helped.  I can hardly tell she had anything done.  I don't know exactly how she used it, but there was something about the action of the tape encouraging blood flow, lymph drainage and a reduction of scar tissue.  

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  • 2 months later...

Resurrecting my own thread to update: After the consultation, I stalled actually scheduling the surgery, both because several things were going on at work that I didn't want to be out of the office and missing and (to be 100% honest) I panicked just a bit.

 

The surgeon pulled no punches in warning me about potential complications. Apparently, the fact that my thyroid refused to die after the RIA coupled with what he observed/felt during the exam suggests my thyroid may be "sticky." The surgeon suggests that this may make the surgery somewhat more involved (He actually used the word "bloody.") than usual.

 

However, I finally ran out of excuses and forced myself to make the call last week. I assumed I wouldn't be able to get on his schedule until mid-December or even early January, but they offered me a date right after Thanksgiving. So, I put the dates on my calendar, requested the time off work and will be forging ahead.

 

Thanks again for the reassuring stories. As I said, I'm not normally weirded out by health stuff. I think of myself as a sturdy, unflappable person about these things, but I do not like going under anesthesia. And I am not looking forward to being out of it for several days, especially while we're trying to integrate a kitten into the family and prep for Christmas.

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  • 2 years later...
1 hour ago, alisoncooks said:

@Jenny in Florida - I'm sorry for bumping such an old thread. I was searching for thyroid removal threads and found this. Did you get yours removed? How has adjusting been? 

 

No apologies necessary. I'm happy to share.

I did go through with the removal. The surgery, itself, was fine. I did end up staying in the hospital one day longer than planned, because I didn't come back from the anesthesia as quickly as the doctors wanted. Other than that, it really wasn't a big deal. I was out of work for a few days (don't at this point remember exactly how many), and I did have some less-than-attractive stitches on my throat for a while.  I bought some inexpensive lightweight scarves that I intended to drape artistically to disguise the scar, but I never could get the look I wanted and found it irritating/distracting to have things wrapped around my throat. So, as soon as the sutures were out, I gave up on trying to cover up.

In general, I was a bit tired but bounced back pretty quickly. My husband had relatives from Canada come visit about a week after the surgery, and I ended up spending a day at Epcot with them while they were here. They were surprised I was feeling up to it, but I did fine.

In the time since, I found my weight gradually dwindled. I'm still not where I was before the first "storm," but with minimal effort or attention, I dropped about 30 of the 50+ pounds I had gained and have mostly maintained it. 

There was a period of a few months (a bit longer than average, apparently) between the surgery and the time my body finally ran out of the hormones that were in my system at the time of the surgery. For the first 18 months-ish, I had blood tests to check my levels every three months, then every six, with office visits to follow up periodically. Pretty much every time I saw the doctor, my dosage was reduced. Especially because I was slowly losing weight, we had to keep adjusting. Nowadays, I'm on an annual schedule for office visits, with blood tests every six months just to check in. So for the first year or so, I was still dealing with occasional low-level recurrance of the same kinds of symptoms I had prior to surgery (rapid/irregular heartbeat, light-headedness, anxiety, etc.) while we tinkered with dosages. Things have been more or less stable since then, except that I gained back a bit of weight recently, despite making no significant changes in diet or activity level. My endocrinologist suspects it may be related to stress (cortisol), but that is probably related to the insulin resistance, not thyroid.

I do have scarring. The surgeon did his best to do the incision inside a natural crease or fold in the skin on my neck, but it's visible. I don't notice it enough or care enough about it to bother with camouflage. 

Mostly, other than remembering to take the pill every morning, it's just not something I think about.

I'm glad I did the surgery, and I definitely feel better. 

Edited by Jenny in Florida
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Honestly, having my thyroid removed was easy!!  It's never, ever been a problem for me.  It was more of a problem to have a problematic thyroid.  🙂  I feel GREAT!  Taking a pill every day is nothing.  It's no different for me than brushing my teeth.   (And if you miss a day accidentally it's not the end of the world.)

My surgeon at first thought it was cancerous, but in the end, it was benign.  (But with indications of pre-cancer cells, I guess?)  However, he told me ahead of time that thyroid cancer is one of the "best" ones you can get, because it's generally all encapsulated and easily removed and over and done.  

Please try not to worry!

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Best wishes for your daughter, alisoncooks. I had a partial thyroidectomy 20 years ago for hyperthyroidism. The surgery was easy. The hospital stay was short. Any discomfort was quite manageable although it took awhile for my blood levels of hormone to drop and for me to feel better. The scar (though still visible when I look for it), has faded nicely.

To me, the biggest post-op issue is to make sure your DD specifically sees an endocrinologist and doesn't rely on her regular doctor to run and evaluate her labs. They can do it, sure. But I have found from painful experience that regular docs look at results and as long as they're in "normal" range, they think you're good. Doesn't matter if your symptoms suggest otherwise. Baloney! See the endo. My DC also was being told over a period of years that lab results were "normal" when, in fact, the child had antibodies for thyroid disease. It wasn't discovered until I got fed up with the pediatrician's cavalier attitude toward kiddo's symptoms and insisted on a referral.

That's my two cents.

P.S. The biopsy is a little scary to think about, but it wasn't a big deal. If they're using topical anesthetic (lidocaine, I think), reassure her that it works really well. I just felt a lot of pressure, but no pain. Good luck!

Edited by Valley Girl
topical not topic
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9 hours ago, Valley Girl said:

Best wishes for your daughter, alisoncooks. I had a partial thyroidectomy 20 years ago for hyperthyroidism. The surgery was easy. The hospital stay was short. Any discomfort was quite manageable although it took awhile for my blood levels of hormone to drop and for me to feel better. The scar (though still visible when I look for it), has faded nicely.

To me, the biggest post-op issue is to make sure your DD specifically sees an endocrinologist and doesn't rely on her regular doctor to run and evaluate her labs. They can do it, sure. But I have found from painful experience that regular docs look at results and as long as they're in "normal" range, they think you're good. Doesn't matter if your symptoms suggest otherwise. Baloney! See the endo. My DC also was being told over a period of years that lab results were "normal" when, in fact, the child had antibodies for thyroid disease. It wasn't discovered until I got fed up with the pediatrician's cavalier attitude toward kiddo's symptoms and insisted on a referral.

That's my two cents.

P.S. The biopsy is a little scary to think about, but it wasn't a big deal. If they're using topical anesthetic (lidocaine, I think), reassure her that it works really well. I just felt a lot of pressure, but no pain. Good luck!

alisoncooks, I didn't see your original post, but I wanted to comment on the above. We go to a military treatment facility for our appointments and when I requested an endocrinologist, my dd was referred to a pediatric endo in the MTF. What I didn't realize was that her specialty was kidneys, not thyroid. The doctor was no more knowledgeable than our GP about the thyroid and relied on the same numbers as the GP.  When I asked if there was someone available who specialized in thyroid, I was told they all study the same stuff, so the specialization didn't matter. Thankfully dd didn't need a pediatric endocrinologist for very long. My suggestion to you is to ensure you have an endo that specializes in the thyroid. 

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@alisoncooks, I didn't see your full/original post, so I'm not sure if my info will be of help or not.

My sister had half of her thyroid removed years ago (due to thyroid cancer). She did great with surgery, actually asked us to bring her a huge burger from a nearby restaurant after she got to her room. She ate it all, lol. She was in the hospital overnight. Almost no scar.

The biggest issue for her is thyroid meds (esp. since she still has half of a thyroid) & getting those properly regulated. I think others have mentioned finding the right person to help with correct medicine regulation & it takes a bit to figure out what works well.

So, the surgery was no biggie for her. Getting the meds regulated (& keeping them that way because your body's needs can vary over time) for the long term has been more of an issue.

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